Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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Global Genes Comments

  1. Hello, my name is Leah. I’ve had lower back and neck pain for years. I’ve been told I have degenerative arthritis, cervical stenosis, and even had a doctor tell me I had bursitis even after x-rays showed I didnt. Doctors aren’t willing to even give me anything decent for pain. I fought for 5 years for disability and finally got SSI. I had a really hard time finding a new doctor because every doctor’s office I called and asked me if I had chronic pain and when I told him I did they would tell me they weren’t taking any new patients with chronic pain. I finally found a doctor and I had recently taken a fall on my front porch and was having really bad pain down my left leg and in my left hip. I thought I had injured my hip but I went to this new doctor and he said he thought I had herniated disc. He told me to come back in 6 weeks and we would see about having an MRI. I waited the 6 weeks and excruciating pain and went back and he wasn’t going to do anything. I told him I wanted an MRI and so he gave in and had one set up. I had the MRI, then I called a couple days later and they looked at the MRI and told me I had to slightly herniated discs but they weren’t bad and they were going to set me up with the pain clinic. I went into the patient portal and looked at the MRI results and it showed 2 slightly bulging discs, an incidental finding of Tarlov cyst and hemangioma(?) tumor within 2 of my vertebra, all in my lumbar spine. They didn’t even tell me. What do I do??! I’m at my wits end. I’m in tears as I’m typing this. No one will help me. I’m to the point that I’m considering finding someone I can get something from for pain, or starting to drink a lot or something. I don’t want to live the rest of my life not knowing if I’m going to be in so much pain I can hardly even turn over in bed, or maybe I’ll feel well enough to actually ride my bike…
    I’m on Medicaid and poor, so going to Texas probably isn’t an option for me. If anyone can tell me anything that may help, even a little, please tell me.

  2. Tara Richardson says:

    I am not one for surgery so I’m hoping beyond hope I don’t need a dangerous spinal surgery that could paralyze me. I already have a neuromuscular disorder and use a wheelchair… Our doctor has yet to call and tell me about the MRI or the Cyst.. We only found out because we went to pick up the MRI… I have fallen pretty hard on my tailbone many times during my life… I would complain of pain but the doctors would say “Oh it’s a little Arthritis”.. Makes me wonder how long I’ve had these cysts and no one metioned them.. I’m going to a neuro consult Monday and I’m gonna ask them to look at my previous MRI results.. They only did the lower spine .. From everything I have read they need to check my whole back for cysts.. I’m so freaked out…

  3. They are really not incidental findings. At first they were thought to be but the next article Dr. Tarlov wrote stated different. And all literature out there says something different. I never had them before these past five years along with excruciating headaches that are like nothing I can describe and wake me up out of a dead sleep. This on top of disc bulging, spurring, degenerative changes, disc narrowing spinal canal protrusion and so on. I am in chronic pain every day. And yes a neurosurgeon has agreed that these are more than likely the cause of the headaches due to leakage of csf we shall see as they are sending me to a neurologist that specializes in controlling pain hopefully without surgery. Good luck to all of you. It has made my body weak in the last several years.

  4. Janet Currie says:

    I have read your posts regarding Tarlov cysts and can entirely sympathise, especially with the first post. I had a very large cyst (it’s called a giana schwanoma) removed from the sacrum over 11 years ago and it has left me doubly incontinent, which I hate. I also am paralysed around the back passage and part way into the crotch, which makes walking very difficult. I don’t have pain, fortunately, because of the paralysis. I had the operation here in England, at the National Hospital for Neurology and Neurosurgery. I have heard of Dr Feigenbaum (I think that’s his name) as I read an article about an English lady who got in touch with the doctor and had the operation in Dallas (luckily she had private health insurance) and was very happy with it. I did get in touch with him but as I had already had the surgery he couldn’t help me. Besides, health care in the US is so expensive. I was hoping to find a site which could reverse the paralysis but I guess it’s permanent .

  5. Chris mcclintock says:

    Hi I have been diagnosed with a tarlov cyst I stay in the UK have said to hell with the pain and started on the pain killers.

  6. Ruchi Chandra says:

    Please contact Dr frank Feigunbaum
    He is the best

    • Jill Fillingham says:

      I just had 6 sacral cysts removed two weeks ago with Dr. Feignbaum. I am 34 years old and my life was greatly affected by the pain and nerve symptoms. My decision to have surgery was easy, if it could help then absolutely. I flew from Michigan to Dallas on my last attempt to get the diagnosis and treatment I desperately needed and it was worth it. I had many doctors tell me there was nothing wrong or they couldn’t help me, and that’s when I found Dr. Feignbaum. I tell everybody he is a life saver, and is worth the trip. It does take time to get into his office, but worth the wait. His staff is awesome and the hospital (pine creek) were the best. Although I’m only 2 weeks out I’m doing better already, I can sit for longer than before surgery, but I do still have healing to do

  7. Ruchi Chandra says:

    Please go to dr frank Feigunbaum in Dallas Tx. Do not even think about going to any other doctor . He is the best

  8. Did you have your TC surgery yet?
    I am in a similar position. I’m a young person who has been bedridden for three years and the medical professionals helping me had no idea what was causing my symptoms. It wasn’t until my most recent physiotherapist recommended I look into Tarlov cysts and see if they matched my symptoms. A few weeks later and haven spoken with Dr. feigenbaum, my sacral TCs have been impinging my sacral nerves and eroding my bone all of these years. I am pregnant right now with my first (surprise!) baby but plan on having surgery as soon as it is safe.
    Thank you for sharing your story and I’m sad to hear that you’ve been in pain like this for so many years. I plan on becoming an advocate myself after surgery (if physically possible). More people, especially healthcare providers need to be aware of this debilitating and painful condition. I sincerely hope you are doing better.

  9. Lorie Estrellas says:

    Was having lower back and left leg pain,numbness and tingling sensation for over a year diagnosed with herniated discs and annular tear. Has been going to a neurologist and physical therapy since then, but my symptom s are not going away and was just getting worse so I requested for another MRI recently and was confirmed to have 2 Tatlov cysts.Sent my disk and report to a neurosurgeon in Sacramento named Dr. Schrot and had phone consultation.Being hesitant to travel to have this treated
    I thought of searching more and found the head of neurosurgeon at Penn Medicine in Pennsylvania is also familiar with this rare cysts.
    I have yet to see him this coming Monday and just praying and hoping that he could really help me to feel myself again.

    • Hi Robin,
      You mentioned your feet. I’ve been having excruciating pain in the bottom of my feet if I’m on them for like 2hrs or even if I have them on the ground and cross my legs. This is just one of many symptoms I have. I’ve got 2 Tarvol cysts in my Cervical region and 7 in my Sacral region. I still need a MRI of my Thoracic region to see if there’s more there. My doctor doesn’t think these are a problem and she doesn’t know crap about them. She says these arent causing any of my pain. Only my Fibromyalgia is causing the pain. I dont believe that at all. I’ve had to fight to get these MRIs. I plan on sending to Dr. Frank Feigenbaum since he knows the best.

  10. I have 3 Tarlov Cyst and was hospitalized December 2016 due to severe pain in my tailbone area. I recently traveled from Ohio to Dallas Texas to see Dr Feigeanbaum. I’m having a nerve block soon, at his request, and then possibly surgery soon. I have no other reason to have the pain so I know it is the Cyst causing my pain. Leg pain, tailbone, feet and sacrum area. Do not let Neuro surgeons touch you until you talk to doctor Feiganbaum in Dallas Texas.

    • Lynda Rex says:

      My best advice for everyone is the ice packs. This calms the nerves. I sleep with ice. I learned this after my surgery with Dr. Feiegenbaum. Good luck to all & God bless you all suffering for these cysts.

  11. I am so sorry for everyone that is suffering from this horrible disease. It is excruitaing and life changeung for the person with the cysts and the entire family. Has anyone expeirence cysts one side of the sacrum and symptoms more sever on the opposite side. This is the case for me. Pain started and is mostly present in the left side. Is now progressing to the right side. It started out as pain in sits bone area which progressively became worse. It is almost a full year now and I am severely limited I. What I can do. Not much. Bending to pick something off the floor is out if the question and sitting is awful too. I have added cushions to car, kitchen chair etc. I recently had epidural steriod injections both sides s1s2 and I feel it has gotten worse. The pain medication doesn’t seem to be working as well as it did before injections. Most positions are uncomfortable. I used to find relief lying down in bed. Yet, I can’t get my legs/groin /feet in a comfortable position. My groin pain, low back pain leg and foot pain ( both feet) is unbearable. Has anyone had plantar fascitis diagnosis or symptoms of plantar fascitis that actually turned out to be from the cysts? I have an appointment with a neurosurgeon coming up and am trying to learn as much as I can from real people’s experiences. I appreciate any feedback. Sending out positive energy for all of you effected by this madness.

  12. I have just been told that I have a tc seen on MRI. My pain dr is sending me to a neurosurgeon.

  13. Jade Green says:

    Diagnosis of TCS last July, loss of feeling in my right leg, cramps and pins and needles in my hands, cyst 65mm length over s1-s4 in heaps of pain but still working as I cant afford not to. 4 kids to care for. I’m just so tierd of beeing in pain. Whish life got easier not harder.

    On the plus side have an appointment with a surgeon in Sydney Australia in March

  14. Anyone have hemangiomas as well? I had my last MRI to see if I’ve had any growth, and I have a hemangioma in my T8 that is atypical and growing. My neurologist didn’t know anything about it. He thought they might be related to TCs, but they grow in the bone…wondering if anyone here has been diagnosed? If so, pain? Growth? Etc? It’s gone from typical to atypical and grown 4mm in 6 months. Thank you!

    • I also have recently had a hemangioma show up on my mri. I have several Tarlov cysts on s1 and s2 and it says numerous perineural cysts throughout the doctor hasnt said anything to me about any treatment..they keep saying fibromyalgia

  15. Your comment is awaiting moderation.

    Hi Everyone! Sorry that we are all here, obviously suffering from TC or trying to help a loved one that is. I have been suffering from terrible tailbone pain since I had my son 8 years ago and the pain has become excruciating in the last year. I cannot sit for longer than 5 minutes without having to lean forward, stand up or readjust myself. Along with the pain I have a burning sensation and numbness down my leg into my feet. I finally had an MRI done this past December and I have 5 TC’s that they put are “incidental findings”. They are not incidental as my pain is the reason I requested my doctor to order the MRI…so frustrating. My biggest cyst is 19mm x 12mm and they are located in the S1 and S2 level. Anyway, I need your advice, do I need to see a Neurosurgeon or Orthopedic Surgeon? My family doctor is referring me to an Orthopedic Surgeon and I want to make sure this is the specialist I need to see. Any advice would be greatly appreciated. I am in Canada by the way.

    • I am so sorry to hear what you’re going through. Unfortunately, I have found there are not many doctors familiar with this excruciating disease. I have 4 cysts, with 2 at 2.5×3.4 cm at s2,s3. They have gotten to the point where they have caused paralysis in my bowels and bladder (also causing acute renal impairment.) I was referred to a NEUROLOGIST by my primary physician, who then sent me to a NEUROSURGEON due to the progressive decline in my bodily functions (excruciating pain aside – I was a ballerina, and can barely walk now.) 4 surgeons later, they all said the same thing “this isn’t your problem.” When I asked how large of cysts they’d seen, they said mine were the largest. I asked if maybe that was why they were causing such damage, but they couldn’t/wouldn’t answer. I, too, found Dr. Feigenbaum (I might have butchered his name.) He said to send all my records, and he’d look at my case to see if he could help me out. They help you with going through insurance, finding hotels, etc (I’m in Atlanta and he’s in TX.) TCs are his specialty. He has videos on YouTube, and his website has wonderful information. Definitely check him out! I hope you can find answers. I will keep you all in my thoughts. We are the only ones who truly know what we go through on a daily basis. Stay strong, keep up with normalcy as much as you can, and stay hopeful <3.

      • susan emmara-klein says:

        my name is susan and I have just been diagnosed with TC on my S2
        I was a ballerina for many years as well,
        I wonder if dancing caused this?

  16. I was just diagnosed in the last week after many visits to the ER not knowing what was wrong, but every day the pain was getting worse. I was fine just 3 weeks ago and now I feel like I’m in hell. My TC is in my neck between c4&5 and it effects my right side (in right-handed) and as of this morning I couldn’t even feed myself. Obviously, I’m not working. I can’t. My fiance had had to take 2 weeks off of work without pay because I can’t do ANYTHING by myself anymore. our finances are just completely screwed. I am pretty tough when it comes to pain, but this is unbearable. I’m only 29 and I feel like a 90 year old woman. I’m trying to stay positive, but it’s so hard to do right now… Trying to stay hopeful.

  17. I have had problems with my right leg/foot aching, electrical shocks, trouble bearing weight for 8 months. My doctor ordered an MRI, which showed 3 Tarlov cysts. Doctor said they were not the cause of my symptoms as it was an “incidental” finding. Has anyone tried taking L-lysine and noticed an improvement?

  18. Brooke Enos says:

    Nearly two years ago, my right leg stopped working. When I tried to use it, I had an incredible amount of spasming of my sciatic nerve as well as muscle spasms in my back and leg. I was diagnosed with a large Tarlov cyst near my tailbone. All the doctors I have seen, including 4 neurosurgeons have told me these do not cause symptoms. I believed them. Four surgeries later, I have only worsened and now can not even sit or stand. I have been to the hospital 20 times including 3 ambulance rides. The hospitals have labeled me as a drug seeker.
    My life is ruined. I lay in bed 24 hours a day. Every. Day. A medical orphan.
    I found out there is a doctor in Dallas, Texas that does this surgery. At this point, surgery is 6-8 months away. This is an unfathomable time frame to me. I will need a special type of private airplane to even get there. If you have any ideas on how to get in sooner or want to offer support, please email me at Thank you

  19. If you need any support or have any questions feel free to contact me at I have had the surgery & live in the Metroplex. Had 6 Cysts total.

  20. Linda in Dallas says:

    I have read through all of your comments and totally feel your pain. I have much of the same back history as many of you, with two lumbar surgeries after a fall in 2003. Like most of you with any back pain history and MRI imaging, Tarlov Cysts were never mentioned. Spinal stenosis..yes, herniated and bulging disc…yes, scoliosis….yes – but no mention of any Tarlov Cysts. I have only learned that I have Tarlov Cysts at S1-S2 in the past month when I had the last lumbar MRI and I have now seen 3 orthopedic surgeons that do not think the TC is an issue. I was scheduled for a steroid epidural next week, but I have canceled after readying about the dangers of this with TC. I made an appointment with Dr Feigenbaum for late November, but my primary care referred me to a neurologists first to have all the information I can possibly gather. I have a really great relationship with my PC. After all the surgeries and treatments that I have had since my fall in 2003 I believe in the bottom of my heart that all my tailbone, buttocks and leg pain are from this rare disorder. Praying for all of us with this disorder to have a good and healthy outcome. Blessings ~Linda

    • I too was recently diagnosed with large Tarlov cyst. I am very curious how your surgery went. I live in Minneapolis and it seems like no one understands or knows what to do with me. I was misdiagnosed for many years.

      • I, too, have a Tarlov Cyst at L5-S1 which is about one inch by one and a half inch and showed up incidentally on an MRI. Have radiculopothy symptoms typical of L5-S1 dermatomes. I believe there is a doctor in Mpls. that treats these cysts and his name is Dr. Sinicropi at Midwest Spine and Brain. If you still need help, try to see him. If your cyst has already been successfully treated please let me know of the outcome. Thank you.

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